Monthly Archives: February 2017

Health Canada, the department of the government of Canada with responsibility for national public health (like the U.S. Food and Drug Administration) has “carried out a review of the potential risk of persistent and disabling side effects linked to the use of fluoroquinolones. The review was triggered by a benefit and safety review done by the United States Food and Drug Administration (FDA) on systemic (taken by mouth or by injection) fluoroquinolone drugs.”

Health Canada’s review concluded that some of the known side effects, specifically tendonitis/tendinopathy, peripheral neuropathy and central nervous system disorders, already linked to the use of fluoroquinolones, may be persistent and/or disabling. Given the high use of fluoroquinolones in Canada and the information reviewed, these side effects are considered rare.

Health Canada recommended that the safety information for all fluoroquinolone products be updated to include information about this rare but serious risk. Health Canada is working with manufacturers to update the safety information of all systemic (taken by mouth or by injection) fluoroquinolone products marketed in Canada. In addition, an Information Update and a Health Care Professional Letter will be published and distributed to further inform Canadians and healthcare professionals about this risk.

Health Canada is working with the Drug Safety and Effectiveness Network (DSEN) and the Canadian Agency for Drugs and Technologies in Health (CADTH) to conduct additional studies to better understand the use of fluoroquinolones in Canada.

On October 6, 2016, Health Canada brought together a Scientific Advisory Panel on Anti-Infective Therapies to discuss the risks associated with the use of fluoroquinolones. The panel recommended that the safety information for fluoroquinolones be updated, and risk communications be published and distributed to further inform Canadians and healthcare professionals about the potential risk that some of the known side effects, specifically tendonitis/tendinopathy, peripheral neuropathy and central nervous system disorders may be persistent and/or disabling.

Health Canada will continue to monitor safety information involving fluoroquinolones, as it does for all health products on the Canadian market, to identify and assess potential harms. Health Canada will take appropriate and timely action if and when any new health risks are identified.

As a result of its safety review, Health Canada is working on updating fluoroquinolone warning labels.

It is recommended that the potential for disabling and persistent serious adverse events be considered when choosing to prescribe a fluoroquinolone.

Fluoroquinolones should not be prescribed to patients who have experienced serious adverse reactions during or after prior treatments.

Healthcare professionals are advised to stop systemic fluoroquinolone treatment if a patient reports a serious adverse reaction. The patient’s treatment should be switched to an alternative treatment with a non-fluoroquinolone antibacterial drug if needed to complete the treatment course.

Healthcare professionals should be aware that some adverse reactions associated with the use of fluoroquinolones can occur within hours to weeks after exposure to the treatment.

This acknowledgement from Health Canada that fluoroquinolones may have permanent and/or disabling effects is a huge step in the right direction for Canadian “floxies.”

Consumer Reports has published several articles about the dangers of fluoroquinolone antibiotics (including Cipro/ciprofloxacin, Levaquin/levofloxacin, Avelox/moxifloxacin, Floxin/ofloxacin, and a few others). Their help in getting the word out to their readers about the risks associated with fluoroquinolone antibiotics is greatly appreciated!

The picture above, from the August, 2016 print issue of Consumer Reports, states:

These potent antibiotics are often prescribed to treat bronchitis, sinus infections, and urinary tract infections. But drugs such as ciprofloxacin (Cipro), levofloxacin (Levaquin), and ofloxacin (Floxin) can cause irregular heartbeats, depression, nerve damage, ruptured tendons, seizures, and other serious side effects. The Food and Drug Administration issued an alert in May saying that fluoroquinolones should not be used to treat bronchitis, sinus infections, and UTIs, unless other options have not worked.

Avoid Problems. If your doctor suggests a fluoroquinolone, ask why. For sinus infections, you might need an antibiotic if your symptoms last more than a week or if you have a high fever, but the first option should be amoxicillin. For a UTI, fluoroquinolones are only necessary if the infection is resistant to other antibiotics or has spread to your kidneys. And they are necessary for chronic bronchitis only if you require hospitalization.

“For example, fluoroquinolone antibiotics such as ciprofloxacin (Cipro and generic) and levofloxacin (Levaquin and generic)—which are frequently prescribed inappropriately for sinus infections in adults—can cause permanent and debilitating damage to muscles, tendons, and nerves.”

As the title of the article says, there are safer, better options than fluoroquinolones (in many situations).

“Research published in The Lancet, a British medical journal, shows that when doctors in U.K. hospitals cut back on prescribing Cipro, Levaquin, and other so-called fluoroquinolone antibiotics, the rate of deadly infections from the bacteria known as C. diff dropped a whopping 80 percent.”

Fluoroquinolones wipe out the good bacteria that keep c. diff bacteria suppressed. When those good bacteria are eliminated, c. diff infections can take over. C. diff infections can be deadly, and all healthcare professionals should take note of this (somewhat counterintuitive) study.

All of the articles linked to above also note that fluoroquinolone over-use is contributing to antibiotic resistance.

All of these Consumer Reports articles are greatly appreciated, and I encourage you to read them, comment on them (where possible), and share them with your loved ones.

Consumer Reports has been a trusted source of information, and a strong advocate for consumer protection, since its founding in 1936. The articles linked-to above are from a highly respected source that is trusted by millions of people. It is a credible publication.

For a trusted and credible publication like Consumer Reports to be publishing information about the severe and varied health maladies that are associated with flouroquinolones is a huge step in the right direction. Their acknowledgement of the FDA’s updated warnings on fluoroquinolones, as well as the testimony of patients who have been hurt by fluoroquinolones, is appreciated immensely.

Fluoroquinolone toxicity and other multi-symptom, chronic, illnesses are not mutually exclusive. It’s possible to be floxed and have Lyme Disease. It’s possible to be floxed and to have Epstein Barr Virus. It’s possible to be floxed and have an autoimmune disease. It’s possible to be floxed and have mercury or lead poisoning.

With that said, you may also have Lyme Disease, or Sjogren’s, or mercury poisoning, or something else. It’s possible, and I think that examining all possibilities for acknowledgement and treatment are helpful.

Illnesses do not always occur one at a time–they can occur simultaneously, and they can overlap. Definitions of diseases are fuzzy too, and if you want to read about how diseases are defined by the drugs that treat them (i.e., the pharmaceutical industry), read Dr. Terry Wahls’ book, The Wahls Protocol, in which she discusses how diseases are defined and developed.

The possible connections between fluoroquinolone toxicity and other illnesses doesn’t mean that fluoroquinolone toxicity isn’t real though. It is real–it’s very real. Whenever people assert that fluoroquinolone toxicity isn’t real, and that people are really suffering from some other illness, I always go back to the beagle puppies that were made lame by fluoroquinolones, and their precursor nalidixic acid. Those puppies may have had some sort of genetic predisposition toward being hurt by fluoroquinolones, but the damage done to them wasn’t really something else. Their lameness, their pain and suffering, was from the fluoroquinolones – period.

I also go back to the mechanism of action for fluoroquinolones. Fluoroquinolones are topoisomerase interrupters. The mechanism of action for Cipro/ciprofloxacin is:

The bactericidal action of ciprofloxacin results from inhibition of the enzymes topoisomerase II (DNA gyrase) and topoisomerase IV (both Type II topoisomerases), which are required for bacterial DNA replication, transcription, repair, and recombination.

AND, you may have Lyme Disease, or lupus, or another illness, as well. So, get tested, and determine a course of action that treats all your symptoms and illnesses. These illnesses are not mutually exclusive, and knowing what you’re dealing with is key to understanding how to approach it. Of course, be careful with the treatments, but knowledge, and an open mind, are almost certainly helpful.

Multi-symptom, chronic illnesses are difficult to understand, and they’re even more difficult to treat. Dealing with multiple multi-symptom, chronic, mysterious illnesses is even worse. Luckily, the things that help people with fluoroquinolone toxicity are often similar to the things that help people with chronic Lyme Disease, or ME/CFS. So, please don’t feel disheartened or overwhelmed if you are facing both fluoroquinolone toxicity and another disease. Hang in there, and know that hope is helpful no matter what the ailment.

Ian was an Olympic athlete prior to getting “floxed” by Levaquin. He has experienced severe fluoroquinolone toxicity symptoms, including multiple tendon tears that put an end to his cross-country ski racing career. Athletes should NEVER take fluoroquinolones. Ian went from being in the 2002 Olympics, to barely being able to walk around the block. If it can happen to him, it can happen to anyone. Please warn all your loved athletes so that they never take these dangerous, disabling antibiotics.

Ian is incredibly wise and insightful. His advice about how to face fluoroquinolone toxicity emotionally, mentally, socially, and psychologically is incredibly valuable. Please take the time to listen to him, and consider sharing this podcast with friends, family, and other loved ones. Ian’s measured and thoughtful voice of wisdom will help them to understand fluoroquinolone toxicity.

One thing that has recently helped Ian is KT tape. He posted this:

I had to let my body cure itself for 8 years, but then this KT and cloth tape job along with compromising my technique is what is enabling me to ski. I use about $25 worth of tape per week! I do this tape job on both legs every time I go out. I am very grateful to be able to ski some again!

Thank you all for listening!

I apologize for the poor sound quality. My voice echoes at the beginning of the podcast. Feel free to skip what I say – it’s not near as important as what Ian says. 🙂

Gaslighting: A form of manipulation that seeks to sow seeds of doubt in a targeted individual or members of a group, hoping to make targets question their own memory, perception, and sanity. Using persistent denial, misdirection, contradiction, and lying, it attempts to destabilize the target and delegitimize the target’s belief.

Gaslighting occurs far too often to patients who experience adverse reactions to pharmaceuticals. Often, it is done by the people patients turn to when they are sick–our trusted advisors, our healers: our doctors.

I don’t think that most doctors mean to gaslight their patients, or that many of them are narcissists or abusers who intentionally manipulate people. I think that most doctors want to heal and help their patients. They use the information and tools that they have to move their patients toward health and well-being.

Yet, gaslighting is occurring.

When “floxed” patients approach their doctors with symptoms of fluoroquinolone toxicity (or FQAD-fluoroquinolone associated disability) they often face denial, derision, and hostility from the doctors who they are requesting help from. The doctors say that the symptoms that the patient is experiencing can’t be from the Cipro (ciprofloxacin), Levaquin (levofloxacin), Avelox (moxifloxacin), or Floxin (ofloxacin), even though most of the symptoms of fluoroquinolone toxicity / FQAD are listed in the 40+ page warning labels. They say that the drugs should be out of the patient’s body, even though the black box warning label notes that fluoroquinolones “have been associated with disabling and potentially irreversible serious adverse reactions.” They say that they’ve never seen a patient who has had an adverse reaction to a fluoroquinolone–and that may be true, but are they looking? They say that delayed reactions can’t happen–but they’re documented. They deny that adverse reactions can happen, probably because they are in denial about the very real possibility that the drugs that they prescribe can cause serious, severe, and irreversible pain to their patients.

Then, they suggest that the patient see a psychiatrist and get on antidepressants.

Some people who experience adverse reactions to fluoroquinolones benefit from seeing a psychiatrist and taking antidepressants (though others are hurt further by both–be careful), and those things aren’t inherently bad, but the implication in suggesting psychiatrists or antidepressants is that patients who are experiencing adverse reactions to fluoroquinolones are crazy. We’re not crazy. Though some fluoroquinolone toxicity / FQAD symptoms are psychiatric, none of the symptoms, not even the psychiatric ones, are choices, decisions, or even the result of being crazy. All the symptoms of fluoroquiolone toxicity / FQAD stem from fluoroquinolone use and the damage done by these drugs.

When a person, especially a doctor, suggests that all the symptoms of fluoroquinolone toxicity / FQAD are in a patient’s head, they are gaslighting the patient and making him or her feel crazy.

Adverse reactions to fluoroquinolones (and other pharmaceuticals) are real, and they happen more often than they should. Denying that adverse reactions occur, then blaming the victim and telling him/her that he/she is insane, is not only useless, it is destructive. It hurts the patient/doctor relationship, and, more importantly, it hurts the patient. As I said above, I don’t think that many doctors intentionally seek to manipulate or hurt their patients. It’s happening though, and it needs to stop.

“I went from doctor to doctor trying to convince them that these drugs did this to my body. They looked at me as if I had ten heads. They couldn’t believe that these medications could stay in one’s body for that long. I was crazy. I would bring them papers to show them proof and one doctor said to me that the medical community would use these papers for toilet paper!”

“I went back to the pharmacist and told him the reaction I had. He said it can happen and it certainly sounded like I had an adverse reaction but he did not report it. I went back to the doctor how prescribed the drug to me and he did not believe me that I had reacted in that manner. Again, no reporting back to any authorities that I had an adverse reaction. I tried to show him the evidence of how many people have been damaged by this group of drugs and how dangerous they are and I was blown off. He told me he prescribes this drug all the time and has never had anyone react. I beg to differ because I bet people do have negative reactions but because they happen after the drug has been used, the connection between the aching muscles, nausea, anxiety, stiffness etc are not connected to the drug they took a month or more ago.”

There are many others.

Floxies are not alone in getting gaslighted by doctors. In the post “The Unintentional Gaslighting of Women and a Goodbye” Kerry Gretchen describes how her stroke that resulted from hormonal birth control wasn’t taken seriously by the doctors who treated her. Support groups for people who have had adverse reactions to a variety of pharmaceuticals and medical devices are full of patients who are frustrated and hurt when their doctor denies both their pain, and the cause of it.

The pain caused by pharmaceutical injuries is real, and patient pain should never be dismissed or denied. When denial of pain occurs, and patients are told that their symptoms are all in their head, it hurts the patient psychologically, and destroys the trust and bond between the patient and his or her doctor.

Doctors can stop this cycle through listening to their patients, not dismissing or disregarding adverse drug reactions as “rare” or “all in your head,” and being conscious of gaslighting as a phenomenon. Good, thoughtful, kind doctors don’t want to hurt or manipulate their patients, but, in order to maintain their worldview about the safety and efficacy of the drugs they prescribe, they often deny and deflect. Hopefully, with awareness of both gaslighting as a phenomenon, and how adverse drug reaction symptoms appear, the cycle will be halted.

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Two guidebooks for getting through fluoroquinolone toxicity

The Fluoroquinolone Toxicity Solution + The Floxie Food Guide:

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